Egenis seminar with Dr Anna Harris 'Selling genetics online, and the questions this raises'
SpeakersDr Anna Harris, Egenis and Maastricht University
University of Exeter,Egenis,Byrne House,St Germans Road,Exeter, EX4 4PJ
Room no: GF7
Time: 3:00 - 4:30pm
Consumers can now shop online in a diverse and growing genetic testing marketplace. Users of this service post a sample of their saliva to internet-based companies in order to discover genetic information about themselves concerning ancestry, paternity, disease and other quirks.
In this seminar I will discuss a project concerning direct-to-consumer genetic testing for psychiatric illness, undertaken with Susan Kelly (Egenis, Exeter) and Sally Wyatt (e-Humanities Group, Amsterdam). I present initial findings from our analysis of company websites, concerning issues such as representation of genetic counselling, involvement of users in research and relations of trust.
This analysis has raised many questions, and as we move into the second phase of our study, involving interviews and focus groups with potential users, we bring several of these questions to the seminar for discussion:
What do we mean when we talk about users of direct-to-consumer genetic testing? Many researchers, like us, want to find and study users. Often we rely upon studies of potential users, acknowledging the discrepancy between what actors say they would do and actual practice. As we design our own study of potential user groups, we consider accounts about, and by, those identified as ‘users’ of genetic tests, from sociological questionnaires, hypothetical studies, YouTube diaries, autobiographies and authoethnographies. In doing so we question what it means to be a user, while considering what these accounts have to tell us about genetic understandings of the self.
Are users the same as consumers? Who do we understand to be consumers? Our own definition of consumers of direct-to-consumer genetic testing includes the pre-symptomatic individual, patients and their families, and physicians. We include physicians as consumers because many of the genetic testing products are marketed either directly to doctors, or to doctors and the public/patients simultaneously. The inclusion of the medical profession in our definition has been treated with scepticism by one reviewer. What are the implications of considering consumption in this way?
What do we mean by mental illness? The focus of our study, genetics, is in the process of redefining the continually evolving and controversial categorisation of psychiatric illness. Genetic testing companies are involved in reclassification through the marketing of their products and through their own research endeavours. Users and consumers of genetic tests utilise their own definitions of mental illness. How do these different classifications and categories relate to each other and what does it mean for our research design?